IVIG Infusions

[Gabriella7]

My appointment with my neuro was today. I am stopping the Mestinon as I could not tolerate the side effect of diarrhea every day with it. He is restarting the IVIG as soon as they can schedule the 3 days and get Gammaguard as I had a reaction to the Privigen which I was given in November. We had to assume it was an extra ingredient in it that gave me extreme spasms in my toes the night of the first infusion.

I am glad as I have basically been mostly in the bed 14 hours out of every 24 since November. The diagnosis code will be for the MG even tho the IVIG will be treating both the MS and the MG. It is still considered experimental for the MS but most all the drugs are. I asked him why he took me off of the IVIG and it was to judge how I did without it. He said he wished they had a better gauge to determine if it is of benefit of not but the only gauge is "how I feel". He also tested my strength and found I am a lot weaker than I was back in November. He hopes he doesn't have to put me on any of the chemo drugs such as Imuran or Cellcept. Anyone else had any IVIG infusions? I know Marc who writes a blog under Wheelchair Kamakaza was on in but don't know if he still is or what result he had with it.

I see my neuro again in 3 months.....

Gabriella:angel:

[stillstANNding]

Linda, "lazarus" has had IVIG, Gabriella. I believe for a long time and loved it.

Glad you are having a treatment that is changed some to eliminate the toe flair.

Best to you,
ANN

[Virginia]

Hope this helps Gabriella. Maybe you will at least get back to where you were in November and I am hoping for better than that down the road.

I hear a lot about IVIG around here and yet Linda is the only one I can think of that has had it that is still around.

Virginia

[Gabriella7]

So expensive!

It is so expensive that if I didn't have my secondary policy (that I kept paying for after retirement) I would not be able to afford the cost. I never even got a bill for the treatments last year. I do know from my statements that it is around $13,000. for one day. I had 5 in June, 3 in July, and 1 in August, September, October, and November. But you know I paid for insurance coverage while I was healthy and able to work for over 25 years so now I need it!

The person who takes care of insurance at the MS center called me today to tell me my secondary coverage had approved Gammaguard for me. Now if the pharmacy will special order it I will get it and if not I'll have a hassle with them. They changed the IVIG they were sending for patients to Privigen and that is what I had in November that gave me problems with spastic cramps in my toes. Very painful!

I'm, calling to see if I can talk to the pharmacist tomorrow as I don't want any surprises next week. I don't need controversy or stress since this is what the doctor ordered also.

Gabriella:angel:

[Gabriella7]

Friday the 13th!

Well I had one hellish of a day I was put on hold about 5 times while being transferred to 5 different people with Medco insurance before I got the answer. I'm glad I checked on it as I found out the co-pay was going to be $163.00 for each infusion. I knew that wasn't right as last year I never got a bill for anything!

The person at the MS Center was not susposed to get pre-authorization thru my seconday insurance but instead it will be paid for by Medicare just like last year and no pre-authorization is required! There is still a problem to be worked out on Monday as the neuro wrote the scrip for Gammaguard SD which is a powder to be mixed and usually it is written when a person has a IGG panel done and needs this special type of IVIG.

So far as I know I have never had my IGG panel checked unless it was done in April when I was in the hospital. Anyone here know what the IGG lab test is for? After spending all morning on the telephone I went back to bed and pulled the covers over my head.

I decided to blame it all on Friday the 13th and start over on Monday.....

Gabriella:angel:

[calcal]

I used to be on IVIG and my MS was stable the entire time I was on it, no MRI changes at all. I had to stop due to a bad reaction.

I'm not sure about an IgG panel except I think they check your IgA status because if you are IgA deficient, it increases the possibility of an anaphalactic reaction to treatment.

IgG is what's being replaced, so they may check to see if you have a deficiency. But I seem to remember them caring more about whether you are IgA deficient since it increases the likelihood of a reaction. I think the initial screening includes all the antibodies, IgG, IgA, IgM, etc.

I hope it helps your MG AND your MS!

[Gabriella7]

Panel

I plan on asking to have the IGA, IGG, and any others checked by someone. I have to find out if my kidney function is still good. Also, I found out that the neuro had sent in the scrip for Gammaguard SD which is the powder that they have to mix. This is not what I had last year. I can't remember who told me they are trying to force me to have me use home health infusion services instead of going to the infusion center.

I am not comfortable with home health nurses since my hospital visit in April and a nurse came to the house. I did not have a good experience with her. With the possibility of an allergic reaction and I have had one with IVP which was a full blown anaphylactic reastion I do not want to be at home if that happens.

It's about the money.....It's always about the money......

Gabriella:angel:

[Parsi]

Gabriella, don't let one bad experience with home health nurses influence use of one in the future. But I would make sure to communicate that you do not want the same one you had.

However, if you had a reaction in the past to the treatment I would think that's enough reason to insist on it being done at hospital or infusion center.

[Gabriella7]

Reaction at Home

Yes, my main concern is having a reaction while at home. They would call 911 which I'm sure would be a 10-15 wait and then a 15-20 trip to the ER. With MG my breathing is already compromised so it would be worse than before. I've got to find the answer to the question as to whether I've had the IGG panel or not.....

MS is bad enough but this is considered an orphan disease as only 1 in 100,000 people get it so it is hard to find a doctor who is experienced in treating it. I only got 10 minutes of his time in the office and didn't know he was going to change the type of IVIG I would get so now when I have questions , I have to call and speak to the nurse and she e-mails him and then calls me back in a day or two with the answer.:ambivalence:

Gabriella:angel:

[Gabriella7]

Clarification

It took some detective work on my part but I finally have some answers to why I was getting no answers. When I asked why the Gammagard Liquid was suddenly stopped in November, no one would give me a answer except to say "We don't know"! (I found out the why when I googled gammagard liquid)

The FDA recalled it as a precautionary measure after the supplier of the glass vials that contain Gammagard Liquid notified Baxter of the possibility that there may be metallic particles partially embedded in the glass on the interior surface of the vials. Now for the worse part of the story as if that is not bad enough.

The infusion center claims that I got another brand of IVIG the whole 5 months thru October 2011. The IVIG I got in November was another brand Privigen and they are claiming that is what I got. The medical personnel are willing to lie (or were told to lie) in order to cover up what might (in their eyes) be a potential claim on a class action lawsuit. I'm certain this is what they were told to tell patients. I have the Medicare explanation of benefits forms (proof) which shows that I did get Gammagard Liquid. Sometimes it is good to be a packrat!

It gets even worse. I found out the Gammagard S/D contains glucose and as a diabetic I should not take IVIG with any sugars at all. I call the MS center and find out my doctor handed the decision as to which IVIG I should get to my former neuro who is the medical director of the MS center.... who handed it off to a new nurse to look up and decide what scrip I should have. I spoke to her and told her I could not have the Gammagard S/D because of the sugar and her reply was that it doesn't have preservatives......duh.......only one out of 7 does!

MG is considered an orphan disease and very few doctors are interested in it. NOT enough money and perks from Big Pharma.

I just made a appointment with another neuro who according to his web page IS interested in treating myasthenia gravis!

Gabriella:angel:

[Frog42]

It's very disheartening to see that finding an honest doctor who cares about helping patients at least as much as lining their own pockets is so difficult! I hope the new neuro works out for you, Gabriella.

[Virginia]

Gabriella, your problems just seem to keep on going. Who would have thought of anything like matellic particles being on the inside of the vial? The people who come up with these things are so smart in some way and then in others it is sad how lacking they are in thinking things through.

I hope you can come up with a good Neuro. It is so hard going from one to the other and trying to get to know them enough to figure out if they are a good fit for you and your situation. That in itself is disheartening. However, hopefully you are on the right page if this new one actually is saying that he treats MG and is familiar with it.

Good Luck and keep us posted about when you get an appointment.

Virginia

[Gabriella7]

Recall on Gammagard Liquid

Yes, It does seem hard to believe that this would happen to the glass vials and result in a recall by the FDA. The lot numbers were published in the recall but how does one know after the fact if this would be the vial that one happened to get. The vials are tossed out after the infusion. I hope I didn't get one of those as I have enough problems already. I noticed that on my last visit where we got Privigen one of the patients asked for the vial that was given to her and she wrote down some information from the vial.

I did come across some more information on Privigen which is what the infusion center is using now. It is all about the money as I said before. It seems the hospital lost money last year if one can believe that. They gave the CEO a big bonus while they were laying off hundreds of personnel. Their contract this year is with the German company that makes Privigen. It does not have to be refrigerated and has a shelf life of 36 months.

The infusion center that I will be using with the new neuro is using the same IVIG. The other IVIG products needed refrigeration which used a lot of electricity. I did have 3 infusions with Privigen and after the first one in November I had extreme spasticity in my toes on the left side but that could be a MS symptom and not a result of the infusion.

I'll know if it happens again.......

Gabriella

[Lazarus]

I did IVIg for 8 years--8 nour infusions every 2 weeks

Hi--
So, I did 140g a month and the cost was upwards of $80,000.00 a month.

It was critical to have premeds which were benedryl and prednisone. If I did not have the premeds I became violently ill.

However, with the premeds I went from almost crawling in for the infusion to virtually skipping on my way out. The infusion started wearing off after 2 weeks which is how we derived the 2 week schedule that i used. After 8 years the infusions stopped showing a benefit and I moved on to novantrone.

I never had any bad reactions to IVIg if premeds were used. I got better as the infusion went on and used the 8 hour days to read and write and had a great day of it.

I do not remember other questions you had and am having trouble using the forum with my webtv's limited browser. It seems that when I have a page that works it will disappear by the next time I try to use the forum. So, email me if you have questions and forgive me for not doing a spellcheck to catch typing errors as i am writing this in a tiny block of space.

[Gabriella7]

PreMeds

My premeds were Tylenol, Benedryl, and Solumedrol so I slept during the first part of the infusion. It was 4 hours at a time for me and one time they tried to speed it up and I got a very bad headache. I've read a lot more and know that the slower the better and will have them slow it down even more the next time.

My schedule has been only once a month but I can tell the IVIG only lasts for 3 weeks so that should be the schedule but we'll see how this new neuro orders it. The cost enters into the picture probably more than when you were on it because I have Medicare as the payor.

I was wondering if you know which brand out of the 7-9 IVIGs you were given? I didn't have as great an improvement as you report but it is being given to me for the MG.

Gabriella